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Vol. 6 No. 1 Newsletter of the Association for Science in Autism Treatment Summer 2009

Autism & Vaccines: The Evidence to Date ASAT Board of Directors For years, frightening method, with its emphasis on cohort that was David Celiberti, Ph.D., BCBA stories have been appearing in peer review, objective matched with other President print, online and on the measurement, and testing of all cohorts for similarity of age Jenna Glennon, M.A.T., BCBA airwaves about a possible link hypotheses) is unanimous in its and other relevant Vice President between early childhood finding that no credible vaccinations and the onset of evidence exists that would variables) autism Elizabeth Dyer, M.A., CCC-SLP autism. These reports often support a connection between cases did not fall, but actually Treasurer 1 rose for that segment.2 refer to the ―controversy‖ vaccinations and autism. Kathryn Dobel, J.D. surrounding this question. Of course, nobody can prove And yet, in spite of all the Secretary While it is certainly true a negative. One can‘t prove epidemiological studies and all that there is controversy, there that no little green men live on the research and all the Megan Atthowe, RN, MSN, BCBA is no substantive argument the moon, but we humans have complicated scientific papers devised a scientific method that that have been produced on this Preeti Chojar, MCA about the evidence surrounding vaccines and autism. At this can tell us, with reasonable topic, there are still many Marianne Clancy point, after ten years of certainty, if there is sufficient people who insist that there is Joseph Forgione, M.B.A research and dozens of large evidence to say that something such a connection. In part, this Beth Glasberg, PhD, BCBA scale studies in multiple is probable or not probable. At is because the nightly news and this point, the evidence strongly the talk shows don‘t really go Barbara Jamison, B.A. countries, the medical/scientific community (that is, the suggests that vaccines do not into the complicated papers or Robert H. La Rue Jr., Ph.D. BCBA medical/scientific community cause autism, do not contribute the research. They tend to give Mary E. McDonald, Ph.D., BCBA that embraces the scientific to the cause of autism, have no sound bites, then set up Joshua K. Pritchard, MS, BCBA role in the onset of autism. In shouting matches between ―for fact, in March of 2005, and against‖ commentators. He Tristram Smith, Ph.D. ―no credible evidence exists that would support a connec- Japanese scientists reported that or she who can shout the Bridget Taylor, Psy.D., BCBA loudest tion between vaccinations and after withdrawing the MMR Mary Beth Walsh, Ph.D. vaccine for a segment (or Continued on page 5.… autism‖ Barbara Wells cohort) of the population (a

ASAT PO Box 188 Consumer Corner: Review of “Life Journey Through Autism: A Parent’s Guide to Research” Crosswicks, NJ 08515-0188 Stacey Sipe, Special Education Teacher How to be a savvy consumer of source of autism As part of my training toward certification as a information offers specific strategies for accessing published E-mail: [email protected] BCaBA, I have visited the website of the Organization research. This section is particularly well organized, listing www.asatonline.org for Autism Research (www.researchautism.org) and several websites for accessing research and tips for effective have become familiar with many of its free publications. Internet searches for research articles. I was particularly drawn to Life Journey Through Understanding the science model delineates the 5 basic Autism: A Parent’s Guide to Research, as I am spending types of research studies (case studies, correlational studies, increasing amounts of time reviewing autism treatment longitudinal studies, experimental studies, and clinical trial research. Reading through published research can often studies) and summarizes their respective advantages and be a challenging and intimidating experience. I can not disadvantages. This column of the newsletter help but wonder how overwhelming it may be for A uniform framework for evaluating research walks will showcase resources and tools parents of children with autism as they try to digest the parents through the purpose and content of the various that consumers can use to better technical aspects of the research literature, discriminate sections of published research and summarizes what the understand and access science- rigorous, well-designed research from poorly executed reader should be looking for when reading them. Helpful based treatment for autism. research, and make sense of the treatment implications examples are offered throughout, as well as some caveats of published findings. surrounding potential conflicts of interest. In this issue of Science in Autism A Parent’s Guide to Research represents the The current state of autism research describes the array of Treatment, Stacey Sipe has collaborative effort of the Organization for Autism current autism research and cautions readers to be wary of reviewed A Parents‘ Guide to Research (OAR) and Danya International, Inc. The claims of ―miracle‖ cures for autism. Research. publication is very comprehensive, well written, and Directions for future research offers parents some insight presented in an organized and understandable format. into the types of questions that warrant further scientific This will be a recurring column This resource begins with an introduction that details inquiry. in the newsletter. how to use the guide and highlights the key sections. Its The Glossary provides clear and concise definitions of preview sets a tone of clarity and ease that is consistent terms that parents will encounter when reading through Kate Fiske, Ph.D., BCBA throughout the guide, research articles. Such terms can be quite intimidating to Consumer Corner Coordinator which is important for a resource intended for a parent those not familiar with the language of research. Science in Autism Treatment audience. Descriptions of subsequent sections follow: Several Appendices are presented in this guide, including Continued on page 18...

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Interview with Dr. Stephen Barrett, Quackwatch Founder— David Celiberti, Ph.D., BCBA As many of our readers are aware, regularly to discuss problems related to journalistic activities pseudo-scientific treatments are not health fraud and quackery. Our initial and decreased my exclusive to autism. We had the focus was on misleading chiropractic psychiatric work until I opportunity to interview Dr. Stephen advertising and antifluoridation scare completely retired from Barrett, M.D., a staunch advocate for tactics. Publicity about our activities psychiatry in 1993. In science and a formidable opponent of eventually led to the formation of several 1996, after completing quackery. Given Dr. Barrett’s similar groups and a national three major books, I started a Web site to make

Science in Autism Treatment longstanding efforts in these areas, it organization emerged from those efforts. some of my findings more available. As the seemed fitting that he would be the Our work has always been appreciated Internet developed, my enthusiasm multiplied first to be interviewed in Science in by science-based professionals and their because investigations that used to take months Autism Treatment. organizations. could often be completed in a few days or even a few hours. In addition, I receive a steady Q: Please tell us about your early Q: That sounds like a very local, grass stream of e-mail messages that ask questions experiences challenging medical roots beginning. What led up to the and report questionable activities. quackery? How were your views creation of Quackwatch.org? perceived by your colleagues at that A: I began writing about my findings in Q: Can you share some information about time? the early 1970s and eventually developed the impact that your website has had? A: In the late 1960s, I began a broad- a sideline career as a medical editor and A: The Quackwatch network has more than based, local group that included health investigative journalist. Over a 20-year 4,500 pages. Our home pages alone receive professionals and laypersons who met period, I gradually increased my Continued on page 6….

Volume 6, Summer, 2009 Tributes to Dr. Edward “Ted” Carr - David Celiberti, Ph.D., BCBA Earlier this summer, the autism interview process that he put in This is a profound loss for our community lost one of its finest. Dr. place. Without a doubt, my decision community. Although I know he Edward Carr and his wife, Dr. Ilene to pursue this career was a direct had more to teach us, his legacy Wasserman, were killed by a drunk result of his class. He was an will continue through his students, driver on June 20, 2009. Dr. Carr was incredible professor; witty, his brilliant writings, and the a Professor in the Department of intelligent, and he had the uncanny transformational impact he has had Psychology at the State University of ability to bring to life concepts and on how we conceptualize New York at Stony Brook, and was findings from published research. treatment. Ted has left an indelible recognized internationally for his He was kind enough to write a letter imprint on autism treatment, and decades of research related to the of recommendation on my behalf. his work will forever be part of the assessment and treatment of During the interview process for fabric of what we do. I have asked challenging behaviors in persons with graduate school. I quickly learned a few individuals to share some of autism. that this incredible professor was their thoughts about Ted and his I first met Ted Carr over 20 years also widely known and esteemed in tremendous impact on the field: ago when I was a college senior at the broader professional community. Drs. Ray Romanczyk, Paul Stony Brook interested in enrolling in As I progressed in my career, my Chance, Joanne Gerenser, Jane his small seminar on autism. appreciation and respect for his work Carlson, and Len Levin. Fortunately for me, I passed the only grew. Another tribute on page 7....

Board Member Bio: Mary Beth Walsh, Ph.D. - Josh Pritchard. MS, BCBA Each issue, an ASAT Board enjoy the old newsletter. As a with ASAT’s mission; however, Member will be asked some long time parent-advocate of to my mind, the right of questions so that the readers effective intervention, I’ve individuals to effective can become more familiar with directed many parents to the intervention and treatment, and the ASAT leadership. This first ASAT website, in particular our the rights of parents to accurate issue begins with Mary Beth Research Summaries on Autism information based on science are Walsh, Ph.D.… Treatments, and was glad to be both deeply ethical issues. In able to volunteer with the Website addition to being an advocate of Q: What got you involved with Committee. science-based intervention for ASAT? individuals with autism, I also A: I joined the ASAT Board of Q: What line of work did/do advocate for the inclusion of Directors in the fall of 2006, you do and how does it relate to individuals with autism in recruited to the cause by a the ASAT Mission? communities of faith, and have co behavior analyst who had worked A:I teach in a graduate program -edited a resource booklet, with my younger son who has in Roman Catholic pastoral Autism and Faith: A Journey Mary Beth with her son autism. However, I knew of the ministry, and hold a doctorate in into Community available organization for years before theology and ethics. This may here hand, and used to receive and seem to some to have little to do Continued on page 18… ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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Comments on Spreckley and Boyd (2009) — Jonathan W. Kimball, Ph.D., BCBA the analysis was that it must have been a Efficacy of applied behavioral intervention peer reviewed studies conducted over randomized or quasirandomized controlled in preschool children with autism for several decades and carried out by trial (RCT), which requires random improving cognitive, language, and researchers worldwide (Baer, 2005; assignment of participants to treatment or adaptive behavior: A systematic review Matson, Benavidez, Compton, comparison groups. Randomly assigning and meta-analysis by Michele Spreckley Paclawskyj, & Baglio, 1996). In what some children to receive treatment and and Roslyn Boyd follows I will explain my skepticism others to receive none or less treatment is Spreckley and Boyd (2009) have concerning the validity of Spreckley and very difficult to accomplish ethically in written a meta-analysis of the efficacy of Boyd‘s conclusion, and discuss why it research with human participants, and ―applied behavior intervention‖ (ABI) ought not to have significant impact on therefore just four studies met all criteria: programs for preschoolers with Autism autism treatment, research, or policy. I Eikeseth, Smith, Jahr, and Eldevik (2002); Spectrum Disorders (ASD). Their article am a clinician, and more, a well-informed Eikeseth, Smith, Jahr, and Eldevik (2007); stirred much interest and conversation consumer than a producer of research, Sallows and Graupner (2005); and Smith, among a variety of individuals concerned and it is in this capacity that I will discuss Groen, and Wynn (2000). These studies are with education and treatment for children Spreckley and Boyd. I will not, therefore, but a fraction of the behavioral research that with autism in the state where I work, provide a nuanced critique of their meta- has been conducted with children with autism—a fact to which we will return because of their conclusion that ―there is analysis: With respect to this article my below. At any rate, based on their statistical inadequate evidence that ABI has better intention is as much to inoculate as to analysis of these four studies the authors outcomes than standard care for children illuminate. concluded ―that ABI did with autism‖ (p. 338). An implication of A meta-analysis involves combining not result in significant this statement is that the authors compared effect sizes (i.e., the quantitative improvement in ABI to another uniform type of expressions of response to treatment cognitive, language, or intervention, when in fact they did no such relative to results for a comparison group adaptive behavioral “With respect to thing. At this time there is no universally or to pre-treatment performance) reported outcomes compared with across several studies for a given accepted form of ―standard care‖ standard care‖ (pp. 341- this article my variable. Results thus aggregated have analogous to what exists for other disorders 342). greater statistical power and thus, it is intention is as or illnesses. We only have the most general For each of the four believed, lead to more valid conclusions variables Spreckley and guidelines recommending features that any about a treatment‘s effects than they Boyd examined—IQ, much to comprehensive program should have (e.g., would if studies were considered receptive and expressive National Research Council, 2001). individually. Spreckley and Boyd sought language, and adaptive inoculate as to Spreckley and Boyd did not refer to such to examine comprehensive behavior behavior they took the — guidelines nor did they demonstrate, for analytic intervention in terms of its aggregated scores from illuminate. “ children who were not receiving ABI, that effects on cognitive, adaptive, and respective studies, any uniform type of care was delivered language development of children with combined them, and across the studies they evaluate. On the ASD (incidentally, what they referred to compared the result with as ABI, is otherwise known as early other hand, specific behavior analytic similarly aggregated intensive behavioral intervention [EIBI] interventions employed in comprehensive scores for comparison or, in an unfortunate conflation of groups. treatment programs for children with discipline and intervention, ―ABA‖). One Continued on page 8…. autism are well represented in hundreds of of their criteria for including a study in

This section of the newsletter Clinical Corner: Toilet Training highlights questions regarding Can the principles of applied trained a typically- developing punishment or verbal reprimand important clinical issues and behavior analysis be used to toilet child you probably used a for accidents. Well…here is my responses from prominent train a child with an autism combination of praise and advice for toilet training a child professionals. We hope you spectrum disorder? rewards for going on the toilet, on the spectrum…use exactly the enjoy their insights and Answered by Frank Cicero, Ph.D., explaining your expectations, strategies that I just described. recommendations! Director of Psychological Services removing the child‘s diaper, So then, why does it seem so at Eden II Programs prompting to the toilet on some much more difficult? One of the

Each future issue of this Here is the good news… type of schedule, rushing him or biggest obstacles is simply getting newsletter will showcase two children with autism can be toilet her to the toilet when they seemed started. Because parents think that like they needed to go, and toilet training will be very Clinical Corner responses. trained through the exact same teaching how to notify you that he difficult, and something so methods that are used with typically - developing children. And what are or she needs to use the bathroom. different than anything else they Lori Bechner, M.A., BCBA these methods? Applied behavior You might or might not have have taught their child in the past, Clinical Corner Coordinator analysis! If you have ever toilet added in some form of Continued on page 4…. Science in Autism Treatment

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Clinical Corner: Toilet Training continued....

they delay training. Toilet training plan, the quicker you will see results. starting with 30 for a girl typically is recommended to For the most intense procedure, I minutes. The child begin at around two years of age. For recommended toilet training for at sits on the toilet and a boy it is a little later (about two and least 6-8 hours per day. I also usually tries to urinate for 1 a half). When it comes to a child with implement the training directly in a minute. If the child is a developmental disability it is bathroom with the child wearing the successful, immediately provide him/ difficult to use these age guidelines. least amount of clothing possible her with a very powerful reward with Instead, a child is ready to begin (usually underwear, shirt and socks). verbal praise. If the child is not Science in Autism Treatment training when they can hold urine in In this way, he or she can easily get to successful, simply prompt him/her to the bladder for at least 1 hour, can the toilet when needed and also you, try again in 30 minutes. In order to remain seated on a toilet for at least as the trainer, can easily and quickly teach requests, prompt the child to three minutes, have an awareness of see when they are beginning to have request the bathroom each time you the relationship between following an accident. are about to prompt him/her to the instructions and getting rewarded, and Toilet training consists of four toilet. You can use whatever do not have significantly interfering main components: prompting to the communication system (i.e. verbal problem behavior. Another challenge toilet on a schedule, rewarding speech, picture exchange, signs etc.) with toilet training a child on the success, teaching how to request, and your child is used to and does best spectrum is the absolute need for quickly prompting to the toilet at the with. consistency and intensity of training start of an accident. For the Now, what to do with the once you begin. The more intense you schedule, I usually recommend accidents? Accidents in toilet training imple- ment a ―Accidents in toilet training are a good thing. In fact, without Volume 6, Summer, 2009 this is not always accidents, you will only be reinforcing prompted trips to the toilet‖ the case. When a child is trained for urination, but are a good thing. In fact, without urination. If they continue (which is continues to have bowel accidents, ASAT Advisory Board accidents, you will only be likely), you reward the behavior with you need to figure out the reason reinforcing prompted trips to the a reward and verbal praise. In this behind the problem before you can F. J. Barrera, Ph.D., BCBA toilet, thereby resulting in a child that way, you turned an accident into a treat it. Is it simply a lack of Stephen Barrett, M.D. is schedule trained instead of positive teachable moment. knowledge? An ingrained ritual or Martha Bridge Denckla, M.D. independent. You have two choices Continue with these strategies until routine? Noncompliance? A medical here, prompting/reinforcement or the child begins to show fewer problem such as constipation? The Curtis Deutsch, Ph.D. punishment. I usually recommend the accidents, goes more on the schedule nature of the accidents will guide William V. Dube, Ph.D. first choice, prompting/reinforcement and begins to independently request. your treatment. Very briefly, if the instead of punishment, at least in the Throughout training it is very problem is a lack of knowledge, a Deborah Fein, Ph.D. beginning of training. Try important to collect data on accidents reinforcement / punishment procedure Eric Fombonne, M.D. encouraging a lot of drinking during and successes, so that you can make should work. This procedure is Richard Foxx, Ph.D., BCBA training hours. Within the first second data-based decisions along the way. similar to the procedure that I of the child having an accident, Fade the intensity of the schedule, described for urination training, Gina Green, Ph.D., BCBA produce a loud verbal startle such as fade out of the bathroom and except that it is rarely implemented William Heward, Ed.D., BCBA ―HURRY, HURRY, HURRY.‖ This ultimately fade the tangible rewards. for 6-8 hours per day. Instead, you is not a reprimand, but should be With this intensive treatment bowel train only when the child is Ronald Kallen, M.D. stated in a very loud, surprising, program, I have seen complete likely to need to have a bowel Alan Leslie, Ph.D. urgent tone of voice. The idea is to training in as little as 1 week, movement. If the problem is more Bennett Leventhal, M.D. temporarily produce a startle response however do not get discouraged if consistent with a ritual or in the child so that urination is your child takes longer. noncompliance, you need a traditional Johnny L. Matson, Ph.D. reflexively held for a brief moment. What about training for bowel behavior plan more than a toilet Joyce E. Mauk, M.D. In that moment, you physically movements? Good news….you often training intervention. And finally, if prompt the child to the toilet, where get bowel training along with the problem is medical in nature, Catherine Maurice, Ph.D. you instruct him or her (now in a very urination training without doing any follow the recommendations of a Bobby Newman, Ph.D., BCBA calm voice) to continue their additional procedures. Bad news… physician or dietician. John Pomeroy, M.D. The Organization for Autism Research will be holding its 7th Annual Stephen Porges, Ph.D. Applied Autism Research and Intervention Conference on October 23-24, Sharon Reeve, Ph.D., BCBA 2009 in Arlington, VA. With the theme ―Evidence-Based Education and Intervention across the Lifespan,‖ attendees will hear from 23 leading Joyce Rosenfeld, M.D., FACEP autism professionals regarding issues from early childhood to adulthood. Arthur Toga, Ph.D. This event is designed to provide parents, educators, clinicians, students, and researchers with access to the Paul Touchette, Ph.D. latest in autism intervention research and evidence-based practice. BCBA, APA, and ASHA Continuing rd Roberto Tuchman, M.D. Education Units are available. Early Bird and group rates are available until September 23 and registration is limited. For more information, please visit www.researchautism.org/news/conference.

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Autism and Vaccines continued.... or who has the most sympathetic story wins. In a contest between a More to the point, it‘s hard to know how The Lancet editors could have tweedy science type from the Center for Disease Control, droning on published such a study. In fact, in 2004, The Lancet editor, Richard about data and research, and a passionate parent who is convinced her Horton, (although still trying to defend his decision to publish the child was poisoned by vaccinations, it‘s highly likely that the parent is essay) did admit that he had not known about Wakefield‘s ―fatal going to win far more support in the court of public opinion. conflicts of interest.‖8 A month later, 10 of 13 of Wakefield‘s co- But truth about the physical material world in which we live, about authors on the study published a ―retraction of an interpretation‖ the action of pharmaceuticals on human development or human concerning the study. The fact that so many of his colleagues were now behavior, does not depend on whether one is a parent or a professional trying distance themselves from this study is particularly noteworthy as or a journalist; it does not depend on who is more attractive, who can retractions are rare in this type of research. The retraction stated, in attack with more biting sarcasm, or who can ―frame the narrative‖ in part: the most appealing manner. Rather, this kind of medical scientific We wish to make it clear that in this paper no causal link was established between truth resides in some objective reality, some verifiability, some (the) vaccine and autism, as the data were insufficient. However the possibility of confirming data. How do particular claims hold up in the real world? such a link was raised and consequent events have had major implications for What is the quality of the evidence being presented to support this public health. In view of this, we consider now is the appropriate time that we argument? Does the evidence continue to look robust and convincing should together formally retract the interpretation placed upon these findings in 9 when brought into the light of skeptical inquiry? Do these claims the paper… make sense? Have they been subjected to rigorous peer review and And what were some of these conflicts of interest? Brian Deer, an replication studies? If so, what were the results? investigative journalist writing for the Sunday Times of London, was What follows is an historical/critical summation of this controversy. unearthing more and more evidence not only of professional conflicts of It is not an analysis of the biochemical research published in dozens of interest also of grave methodological flaws and serious ethical academic and scholarly papers. Such analysis is available elsewhere for 3 violations in the way Wakefield was conducting his research. interested readers. Rather, the purpose of this essay is: According to the documents and evidence uncovered by Deer:

 To summarize the major findings to date of that research.  Most of the children participating in  To explain the origin of the controversy, setting it into an Wakefield‘s study – purportedly selected at accurate historical context. random for his ―objective study‖ – were  To discuss the importance of evaluating the ―quality of the engaged (through their parents) in an attempted evidence‖ behind any new theory about causation and lawsuit against the manufacturers of the MMR treatment for autism. vaccine.  To propose, for parents and professionals and journalists  Wakefield himself had received funding for this alike, a framework for decision-making and discernment research from a personal injury lawyer, Richard regarding such theories and claims. Barr, who represented these children.

Origin of a controversy  Wakefield and Barr, far from conducting a There are two theories about vaccinations and autism. One was disinterested evaluation of a possible first proposed by Dr. Andrew Wakefield, a British surgeon specializing hypothesis, were actually trying to gather in gastrointestinal disease. In 1998, Dr. Wakefield published an article evidence for their lawsuit. in The Lancet, speculating that the Measles Mumps Rubella (MMR)  The children were subjected to intrusive, vaccine somehow was implicated in the onset of autism. The second dangerous tests, including painful lumbar theory is that thimerosal, a form of ethyl mercury used as a preservative punctures and colonoscopies, without proper in vaccines prior to the early 2000‘s, contributed to the onset of autism. informed consent. Speculation about the effects of thimerosal, fueled in part by cautionary  Wakefield had recruited children at his son‘s statements issued by reputable organizations about safe and unsafe birthday party - some as young as four years levels of mercury, included the possibility that the preservative old, and some of whom he later jokingly damaged immune systems and neurological functioning. Politicians recounted had vomited or cried - and paid them from both sides of the aisle, including Dan Burton, grandfather of a five pounds each for samples of their blood.10 child with autism (and someone who had previously become known for his loud support of laetrile, the fringe therapy for cancer)4, as well as the In 2005, the General Medical Council of Great Britain charged environmental activist Robert F. Kennedy Jr., joined the chorus of Wakefield and two of his colleagues with ethical and professional misconduct.11 Wakefield refused to back down, taking his case to the voices linking mercury and vaccines. Journalist David Kirby‘s incendiary book, Evidence of Harm,5 added more fuel to the fire. public, and garnering wide support with his claims that he was being persecuted for speaking out in defense of children. The claims and Wakefield‘s theories received widespread media attention and triggered what became an international panic over the use of the MMR counterclaims are still dragging on to this day. But in February of vaccine. Overnight, parents were besieging their doctors with questions 2009, The Sunday Times of London reported that evidence presented to about vaccine safety. The release of the study led to a steep decline in the General Medical Council had revealed that Wakefield had ―changed 6 and misreported results in his research, creating the appearance of a Great Britain‘s vaccination rate and a subsequent outbreak of measles. 12 By January 2003, vaccination among two-year-olds in Britain had fallen possible link with autism.‖ The investigation revealed that no to 78.9%, below the 95% level needed to protect the population,7 and measles virus whatsoever had been detected in any of the subject cases of measles began to rise. The fear spread exponentially, not only children, contrary to Wakefield‘s stated assertion in his paper. In other to the United States, but all over the world. Upon closer examination words, according to this Sunday Times report, it appears that that critical data were simply made up.13 however, Wakefield‘s research was looking more and more flawed. It is hard to understand how any reputable scientist, researcher, or M.D. Faced with increasing accusations and mounting evidence of could allow such material to be published; especially in light of the very serious repercussions that he surely must have known would follow. Continued on page 10.…

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Interview with Dr. Stephen Barrett, Quackwatch Founder continued…. more than 1 million hits per year, and our e- such as chelation therapy—would not be The second is to seek out frequent and mail newsletter has nearly 11,700 subscribers. prevalent. extensive media exposure showcasing Search engines rank our articles very high, The most effective vaccine opponent is science-based treatment. We also need to probably because thousands of other sites link actress Jenny McCarthy. Her ideas that discourage talk-show hosts (most notably to us. Many people thank us for steering them vaccinations cause autism and that Oprah Winfrey and Larry King) from away from scams and schemes. We also get children get too many too soon are dead providing a platform for anti-vaccination lots of hate mail from people whose cherished wrong. She’s dangerous because she does scare tactics.

Science in Autism Treatment beliefs we criticize. not come across as an extremist. She The third is to mobilize people who understands almost nothing about medical have been victimized to strike back. Q: Aside from the significant impact of science. But with continual promotion by Thousands of parents have been tricked your website, what do you consider among Oprah Winfrey and Larry King, she has into believing that their child with autism your greatest successes in countering managed to reach young parents on an is suffering from heavy metal toxicity and pseudoscience? emotional level by talking about her needs to be chelated. The main device used A: My college textbook, Consumer Health: A personal experiences. Newsweek recently to do this a provoked urine test for heavy Guide to Intelligent Decisions, now in its 8th published a cover story criticizing Oprah metals. The article at edition, has helped educate many teachers of for providing a forum for bad health http://www.quackwatch.org/t explains why health education. advice. provoked testing is a fraud. Parents who understand this should complain to the Q: It is wonderful to hear that your Q: It is unfortunate that you and others licensing boards about the doctors who use textbook has been revised and improved have had to work so hard to debunk such tests. upon so many times. It speaks to the forever quackery when the onus should be on evolving nature of science and how it treatment proponents to provide Dr. Barrett, we appreciate this Volume 6, Summer, 2009 informs best practices. legitimate data to substantiate their opportunity to talk with you about these As you know, the field of autism is fraught claims. What lessons should advocates important matters. You have been a with medical and non-medical treatments of scientifically validated treatments of persistent voice for science and your that lack any scientific basis. Is the degree autism learn from the resilience of impact has been significant. Your efforts unique to autism or fairly rampant across pseudoscientific treatments? have had an incredible influence on not other disorders? A: There are several lessons to be learned: only the autism community, but by those A: There are quack approaches for preventing 1) Quacks never sleep; 2) Most people do impacted with any disorder who have and treating virtually everything. I don’t know not see quackery as a serious threat; 3) been distracted and misguided by of any published comparative statistics. Most professionals are too busy (or too pseudoscience. However, it is clear that the percentage of nervous about being attacked) to get families with a child with autism who have involved; and 4) Unfortunately, the been significantly victimized is very high and Internet makes it possible for anyone to Stephen Barrett, M.D., a retired that many of them are involved in legal and publicize misinformation. psychiatrist who resides near Chapel Hill, political actions that are very costly to our North Carolina, has achieved national society. In fact, the volume of inquiries about Q: Very succinct and very true. As we renown as an author, editor, and consumer autism-related quackery led to the creation of have seen with facilitated advocate. An expert in medical www.autism-watch.org in 2004. communication, proponents of communications, Dr. Barrett operates During the past few years, anti-vaccine pseudoscience never go away as well. Quackwatch, Autism Watch, and 21 other activists have been causing trouble not only What do you see as the most serious Web sites and edits Consumer Health for families of children with autism but for issue to combat in autism currently? Digest (a free weekly electronic parents in general. Much of the problem is A: Chelation therapy for nonexistent newsletter). He has written more than fueled and facilitated by a small network of “heavy metal toxicity.” It’s expensive, 2,000 articles and delivered more than 300 misguided physicians, without whose carries some physical and psychological talks at colleges, universities, medical participation the worst sorts of exploitation— risk, and encourages false beliefs that schools, and professional meetings. His 50 vaccinations are dangerous. In fact, I have books include The Health Robbers: A created http://chelationwatch.org/ to warn Close Look at Quackery in America and the public about chelation therapy. seven editions of the college textbook Consumer Health: A Guide to Intelligent Q: Aside from helping consumers be as Decisions. He is listed in Marquis Who's knowledgeable and aware of research Who in America and received the 2001 and the distinction between science and Distinguished Service to Health Education pseudoscience, what can be done to Award from the American Association for ―Quacks Never Sleep‖ weaken the influence of pseudoscience in Health Education. His media appearances autism? include Dateline, the Today Show, Good A: One is to develop well-written articles Morning America, ABC Prime Time, about each of the treatment modalities Donahue, CNN, National Public Radio, offered. Some individuals and groups have and more than 200 radio and television addressed some topics, but more need to be talk show interviews. covered.

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Chelation Treatment for Children with Autism—Joyce Elizabeth Mauk, M.D. One of the unfortunate byproducts of the It is important to note that chelation has case-control studies with high numbers of media hype relating autism to vaccines is some legitimate uses. In particular, it is participants as the highest. Also, good renewed interest in chelation as a treatment indicated for removing lead from children scientific studies have clear outcome for autism. Chelation refers to a medical with severe lead poisoning, and many papers measures (for example a decrease in the procedure that uses chemicals to remove in the medical literature confirm its efficacy counts of abnormal behavior, an increase in heavy metals from the bodies of children for this purpose. Of note, however, chelation skills learned, etc) as opposed to reporting a with autism. The agents most commonly used is also an unproven, but widely-prescribed subject being generally ―better‖. They are Calcium Disodium ethylenediamine- treatment for atherosclerosis. There are also control for other competing variables, i.e. no tetraacetic acid (Ca-EDTA), industrial uses for these chemicals. change in medication, diet, or therapeutic Dimercaptosuccinic acid (DMSA) and 2-3- Determining whether or not chelation is intervention during the course of the study. dimercaptopropane-1-sulfonate (DMPS). an appropriate treatment for autism is Also the evaluators of outcomes should be These man-made molecules all have a high predicated on chelation proponents obtaining ―blind‖ to the treatment condition, not affinity to bond metals and remove them and publishing high-quality scientific knowing if the child has received the active from the body via urine when the drug itself evidence to support their assertions. Medical agent (chelator) or not. is excreted. In addition to these more scientific evidence is published in legitimate Whether or not exposure to heavy metals traditional chelation agents, I have found peer-reviewed scientific publications. causes autism requires conducting careful Internet references to the use of the herb Scientists submit publications with a studies to identify patterns that would cilantro and certain types of clay for hypothesis to test and present their evidence suggest causality such as a temporal chelation. to prove or disprove it. Editors have experts association of cause and effect (e.g., whether The administration of metal-binding in the field review papers and decide if they mercury exposure is followed immediately molecules to treat autism is based on are appropriate for publication. This process by signs of autism), a plausible biologic speculation that mercury poisoning (via can lead to delays in making new scientific mechanism, and a dose response relationship administration through immunization, information available to the public or treating (e.g., whether higher levels of mercury mercury-containing dental fillings or physicians, but there are many safeguards in exposure increase the risk of autism). environmental exposure) causes autism. this process. There is also a hierarchy of Existing scientific evidence does not support Therefore, the rationale is that removing the quality of scientific studies with case reports, mercury as a cause of autism, and suggests toxic metal will cure the autism or lead to an testimonials and expert opinion being at the instead that a number of genetic variations amelioration in the symptoms of autism. lowest level of quality and with randomized are most likely responsible for the condition.1,2 Continued on page 14…. Tribute to Dr. Edward “Ted”Carr — Paul Chance, Ph.D. Former ASAT Advisory Board Member Ted was a professor of psychology at the State there was nothing bizarre about the desires themselves: University of New York in Stony Brook, a fixture there We all want to get out of unpleasant situations since the seventies. He taught courses in ABA --applied sometimes, we all want to obtain rewards. What was behavior analysis-- and did research on the treatment of bizarre was the way the child communicated these children with developmental disorders, particularly desires. Ted theorized that if he taught these children autism. Although autism is presumed to have a biological more appropriate ways of communicating what they “That was Ted origin, ABA is so far the only treatment that has met wanted, their inappropriate behavior might decline. scientific standards of effectiveness. Basically it helps They might learn to say, ―I need help‖ or, if they could Carr. He did children learn, through special forms of instruction, the not speak, they might learn to point or make a gesture. social and cognitive skills that most children pick up Ted found that when he taught children with autism what he could. incidentally. Ted not only used ABA to help children with alternative ways of letting people know what they autism get control over themselves and their lives, he also wanted, the screams, violent outbursts, and self- Fortunately, trained dozens of graduate students to do this work. And injurious behavior typically declined sharply. through his research he provided new insights into After the fact, such insights may seem obvious, that was a lot.” developmental disorders and new techniques for their but that is the nature of insight. I can tell you that the treatment. idea that children with autism often behave bizarrely to ~Paul Chance He is perhaps best known for his work on the communicate and that they can be taught more functional nature of aberrant behavior. Years ago Ted appropriate ways of communicating was not obvious to discovered that some of the most challenging and bizarre the hundreds of psychiatrists, psychologists, behavior of children with autism was likely to occur when pediatricians, and parents who worked with autistic they were performing a task they found difficult. For children decades ago. example, when asked to make his bed, one boy made To do this kind of work takes an extraordinary mistakes such as putting the sheet on top of the blanket. person, and that is what Ted Carr was. Years ago when When asked to correct his mistake, he would become Ted had a sabbatical, I asked him how he had used the agitated and bite himself and hit his mother. This ended time. He said that he spent part of it in Europe, working the bed-making task. The ―dysfunctional‖ behavior was with children who were deaf, blind, and mentally actually quite functional: It allowed the child to escape a retarded. I said, ―That doesn‘t give you much to work frustrating situation. In other instances, the function of the with, does it?‖ He said, ―No, but you do what you can.‖ behavior might be to obtain attention or a treat. That was Ted Carr. He did what he could. Ted realized that in a sense the child was Fortunately, that was a lot.

communicating his or her desires. He also realized that Another tribute on page 8…. ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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Tribute to Dr. Edward “Ted” Carr — Joanne Gerenser, PhD., CCC-SLP, Executive Director, The Eden II Programs I was so saddened when I heard the brilliant work in the development of first was his willingness to listen and to news that Ted Carr and his wife Ilene were functional communication training? Or discuss issues. Although Ted and I may not killed in a car accident in Long Island. I first maybe it should be about his work as a highly have always agreed on all issues in the met Ted when he was our keynote speaker respected teacher, both at State University of treatment of individuals with autism, he many years ago at the New York State New York at Stony Brook and in the always listened with great interest, respected Association for Behavior Analysis. I had community at large through his workshops my opinions and generously provided me read much of his work and was so excited to and lectures? Perhaps it should focus on the with his wisdom and perspectives. The Science in Autism Treatment actually be able to have the chance to meet work Ted and his students did on quantifying second thing that I loved about Ted was how him. We then presented together a variety of such elusive concepts as happiness, much he cared about the quality of life of times over the years. Whenever the hosts of friendships, and other essential factors that people with autism and their families. I the conference planned a speakers‘ dinner, I contribute to a good quality of life. I decided believe that this was clearly the driving always made sure I grabbed the chair next to that it would not be possible to even touch impetus for all of his work. Finally, one can Ted‘s. I can honestly say that every single upon on all of the important contributions not write about Ted without discussing his time we chatted, I learned something new that Ted made to the field of applied behavior sense of humor. I am so grateful that I had that somehow influenced my work with analysis and to the lives of people with the opportunity over the past decade to spend children with autism in a positive way. autism and their families. There are simply time with Ted, laugh at his dry sense of As I sat down to write this tribute to Ted too many and doing so would truly require a humor, and learn from one of the best. He I tried to decide what to focus upon. Should book. will be truly missed, but his contributions to it be the incredible work he did in functional So instead, I will focus on the three the field will be a part of us forever. behavior assessment? What about his things I truly admired most about Ted. The Other tributes on page 9 and 11….

Volume 6, Summer, 2009 Comments on Spreckley and Boyd (2009) continued.... if medical research were practiced in a manner that disregarded While four studies met their inclusion criteria, data only individual uniqueness, we could put every participant‘s blood into the happened to be available from different combinations of three studies same vessel and just run one test. As James Johnston (1988) wrote, for each of the four variables. When these data are examined ―Behavior exists only between individual organisms and their more closely, a startling realization dawns: Sallows and Graupner environments, and in order to be effective, experimental studies must (2005) is included in the analysis of all four variables, and in every respect this fact…This means that if experimenters do anything that case, the mean score in that study favors the comparison group over contaminates, dilutes, or otherwise distorts measures of behavior the treatment group. Later in the text, Spreckley and Boyd tell us change, there is likely to be some deleterious effect on the inferences ―The results of this review should be interpreted with caution that can be drawn from the data. Among other actions, this caveat because [for two studies, Sallows & Graupner, 2005, and Smith et clearly includes the variety of measurement and data processing al., 2000] the content of the intervention was the same for the techniques that result in collating individual data into some group comparison group, although at reduced intensity (80% and 16%)‖ (p. amalgam‖ (p. 2). 343, emphasis added). In other words, Sallows and Graupner‘s What Spreckley and Boyd did, in discussing the results of their comparison group the one favored in the analysis was also — — meta-analysis, was to draw conclusions based on an amalgam of ! The comparison was really between clinic-directed receiving “ABI” already amalgamated data. When done well, this method of analysis vs. parent-directed behavioral programming (the latter actually can be appropriate to retrospectively assess the degree of confidence having 82% of the overall hours [T. Smith, personal communication, we should have in extant data, and by extension, the conclusions June 30, 2009]). The higher parent-directed comparison score drawn from those data (see Reichow & Wolery, 2009, for a more considerably lowered the average for Spreckley and Boyd‘s comprehensive meta-analysis and more humble conclusions). When it aggregated ―treatment‖ group for all four variables. This low average comes to learning about behavior, however, this method is like was the principal basis for Spreckley and Boyd‘s statement that inserting yet another mattress between the princess and the pea. If the ―Current evidence does not support ABI as a superior intervention Sallows and Graupner data were to be eliminated from the analysis, never mind for children with ASD‖ (p. 342). Their bold conclusion— the conclusion would be quite different yet probably no more the unsubstantiated and ideologically hand-tipping closing remark enlightening: in terms of behavior, individual differences would still that ―the overwhelming majority of children with ASD change over be lost, with no accompanying gain on the statistical side because any time as part of their development as opposed to change resulting analysis would be suspect due to an insufficient number of thus went well beyond the data and from an intervention‖ (p. 343)— participants. Adding a much larger sample of children in order to seemed to ignore their own admonition to interpret the results with increase statistical power, however, would also increase the caution. heterogeneity of the sample. A large sample would then entail the use I think it would be widely acknowledged that what is measured of additional statistical procedures to help determine the extent to and evaluated in autism treatment is behavior. Further, it has been which heterogeneity influences the generalizability of the findings— argued that children with autism are unique, as different from each which seems like taking one pill to help manage the undesirable other as from typically developing children. Some of the research effects of another. that employs inferential statistics with aggregated data reminds me of Despite Spreckley and Boyd‘s faulty conclusion, their argument a metaphor facetiously related by one of my professors, who said that Continued on page 9…

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was really not about efficacy, but about evidence itself. By child with autism requires a unique sequence of behavior changes ―evidence,‖ Spreckley and Boyd were primarily referring to a made by different procedures to maximize his or her chances of particular kind of experiment, the RCT, as the grail of research, as the achieving the best outcome possible. ABA is, as far as I know, the one true means of producing valid data for making sound conclusions only approach that has always measured its outcomes objectively, about reported effects. Much has been written about insufficient RCT reliably, and validly. Approximately 500 published studies show data to support comprehensive behavioral intervention (cf. two fine that one or a few of the many behavior changes children with articles by Reichow & Wolery, 2009, and Rogers & Vismara, 2008), autism require can be made by ABA programming. True, perhaps but I think this concern is to some extent misplaced or premature. 300 of those 500 studies lacked a convincing experimental design Reichow and Wolery may have been technically accurate when they and formal evidence of reliable measurement, but the other 200 said that ―Without comparisons between EIBI and empirically replicated their results and extended them with good measurement validated treatment programs, it is not possible to determine if EIBI is and convincing designs. ABA is, as far as I know, the only more or less effective than other treatment options‖ (p. 39), but while approach that has evaluated outcomes in well-controlled clinical comparison may constitute one kind of worthwhile pursuit, it has its trials…. ABA has produced unprecedented good results…[and] no own shortcomings. other approach has proved that it can do nearly as well, as far as I First, comparison studies are as much an actuarial endeavor as a know (p. 6).‖ clinical one. The chief aim of such research is ―to estimate dividends In this paragraph, Baer not only suggested that no two children and risks for general categories based on statistical records alone, that will, or ought to, receive identical intervention components under the is, without attempting to understand the reasons for each event so as to umbrella of EIBI, but also indicated the single-subject nature of allow prediction in a more individualized fashion‖ (Johnston, 1988, p. behavioral research. What characterizes EIBI is less any given 3). Well-conducted RCTs can indeed help identify individual intervention, which may happen to have been developed by behavior characteristics that, statistically, seemed to enhance or impede analysts, and more that the effects (dependent variables) of every response to a given treatment—valuable information indeed—but if a intervention (independent variable) are measured frequently and specific participant does not respond to that treatment, researchers are reliably. An instructional method is employed because (a) it has a more often left merely with ignorance than with alternatives. The documented track record of effectively teaching specific skills under autism community would be better served by studies that seek to similar circumstances in the past, and (b) it remains effective in its match child characteristics with the most promising type of treatment current use with a child, as demonstrated by regular monitoring of program, as Sherer and Schreibman (2005) did with Pivotal Response performance data. In other words, individual outcomes matter more Training and a more structured behavioral approach (some benefitted than whatever specific technique reliably produced them, but it from the former, others, the latter—these are individual judgments and happens that we know more about behavioral methods because their cannot be made a priori on the basis of aggregated data). outcomes have been so extensively measured—sometimes well Second, when it comes to treatment of children with autism, there enough that alternative explanations for the change can be confidently is really very little to compare. There is much data supporting the ruled out. efficacy EIBI, while the amount of experimental research produced by Spreckley and Boyd‘s concern was not only with the kind of non-behavioral programs is minimal at present (Schreibman, 2005). available evidence—RCTs versus single-subject research—but also There is no law requiring the use of behavioral techniques for children with the amount of available evidence. This is not an academic with autism; there is, however, a federal law (the Individual‘s with consideration, when federal law calls for the use of empirically Disabilities Education Act) mandating that practices be based on ―peer supported practices but does not spell out how much peer-reviewed -reviewed research,‖ and when it comes to children with autism, most research is enough. Spreckley and Boyd chose to apply a strict of the extant research is behavioral. ―threshold‖ standard, an all-or-nothing judgment whereby an At this point, I must clarify what is denoted in speaking of ―EIBI‖ intervention program that is not supported by a certain number of and ―behavioral research.‖ Saying a child received EIBI is like saying RCTs is not considered to be supported at all. In contrast to this, there a child received college. I think Don Baer (2005) put it very well: are also hierarchical standards of evidence, such as those of the ―ABA [EIBI] acknowledges from the outset of each case that each American Psychological Association, which place interventions, Continued on page 19.…

Tribute to Ted Carr — Raymond G. Romanczyk, Ph.D. BCBA-D ―I remember Ted for his kindness, energy, and wit, and that I always had In the two weeks since Dr. Carr‘s death, understandably many humor that had an fun when I saw him.‖ tributes and reviews of Dr. Carr‘s work and contributions have been incredible ‗bite‘, presented to honor this important contributor to the field of autism. I but he was always ~Raymond Romanczyk still recall vividly his paper ―The Motivation of Self-injurious playful, genuine, and Behavior: A Review of Some Hypotheses‖ back in 1977 and how it engaging. I recall fondly the verbal jousting matches we had right served to place into strong focus the importance of antecedent and from time we first met, that prefaced each of our subsequent contacts, well as consequence in the behavioral equation. His work has been whether sitting in a restaurant or at a formal committee meeting. The incorporated into, and influenced, the many different forms of topics were usually not about professional issues, but would be wide behavioral approaches. He leaves behind legions of students, ranging, usually focused on the absurdities of life. The joust would colleagues, and families he has touched so profoundly. His last 5 or 10 minutes until we would both say ‗uncle‘ and call it a professional legacy will endure for a very long time. draw, resting a bit after the interchange. We would then talk about But aside from his enormous professional contributions, I important things, and for Ted that was always about family, before grieve for my friend Ted. We met more than 35 years ago as we would have to move on to the professional issues at hand. energetic wide-eyed graduate students, well before autism was a hot I will miss Ted the person very much.

topic. I remember Ted for his kindness, energy, and wit, and that I Raymond Romanczyk is a SUNY Distinguished Service Professor always had fun when I saw him. Some say he had a dry sense of Director - Institute for Child Development humor. I just thought he was hysterical with his keen insight based Binghamton University ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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Autism and Vaccines continued...

malfeasance, malpractice and fraud, Wakefield‘s response was to Study after study, but who is reading them? threaten his critics - including journalists, The Lancet, the General With the evidence supporting Wakefield‘s theories evaporating Medical Council and the Chief Medical Officer in Great Britain. To into scandal, and the thimerosal link proving speculative at best, one date, however, most of these lawsuits have been dismissed, and he has would think that the controversy would die a natural death, but this did been forced to pay defendants‘ legal fees. And yet, he continues to not happen. Nothing dissuaded those who insisted on a connection that practice and preach about the dangers of vaccines. Meanwhile the somehow, in some yet undetected manner, vaccines had to be the incidence of measles continues to rise, as more and more parents refuse culprit. Here in the United States, Robert F. Kennedy, Jr. and to vaccinate their children. As of this writing, two British boys have Congressman Dan Burton continued to ratchet up the rhetoric, accusing Science in Autism Treatment died of this once near eradicated disease. While awaiting final outcome the government and ―Big Pharma‖ of poisoning children, then trying to of these General Medical Council hearings, Wakefield now lives and cover up the evidence. Other politicians such as John Kerry, John works in the United States, where he enjoys a devoted following.14 McCain and Joe Lieberman expressed strong reservations about vaccine But even his most ardent supporters may begin to lose their trust in safety. Celebrities and stars jumped onto the bandwagon. Deirdre and him as more and more information comes to light: For instance, even Don Imus became vocal supporters of the cause. Senator Lieberman before he published his now infamous study, Wakefield had been announced that he was ―for the parents‖ in this controversy. Parents working on the development of his own alternative vaccine – a vaccine reached out to other parents on the Internet, and founded organizations to treat (even cure) not only inflammatory bowel disease but autism. to protest what they saw as a government/pharmaceutical conspiracy. Here is how he describes this work, taken from another (later) Patent Money poured in to these agencies, and more and more parents started Application: refusing vaccinations.

The present invention relates to a method for the diagnosis of Government agencies and the medical establishment, meanwhile, regressive behavioural disease (RBD also referred to as in an effort to take parental concern seriously, keep launching study ―Regressive Developmental Disorder‖) or Autism. In my earlier after study to address the concerns. (It is perhaps important to point out Patent Application No. WO 96/30544 I have described how that while these efforts were no doubt well intentioned, the reality is

Volume 6, Summer, 2009 persistent measles infection whether of a wild type or vaccine that they diverted huge resources of funds, time and expertise: resources mediated is the origin of some forms of IBD [Inflammatory Bowel that could perhaps have been put to better use in the care and education Disease.]… I have now discovered a combined vaccine therapeutic of children with autism.) In any case, in 2001, the National Institute of agent which is not only most probably safer to administer to Child Health and Human Services issued this statement:

children and others…but which also can be used to treat RBD The Institute of Medicine (IOM) at the National Academy of [―Regressive Behaviour Disorder, or Autism‖] whether as a Sciences, at the request of the Centers for Disease Control and 15 complete cure or to alleviate symptoms. [Emphasis added] Prevention (CDC) and the NIH, conducted a review of all the

And what about thimerosal? Once doubts began to surface about evidence related to the MMR vaccine and autism…The IOM the Wakefield hypothesis, those who insisted that vaccines just ―had‖ to concluded that the evidence reviewed did not support an be the culprit in autism started focusing on the preservative thimerosal. association between autism and the MMR vaccine.

But there was a problem with this theory as well. Thimerosal had And again in 2004, the Institute of Medicine conducted another begun to be phased out of vaccines in 1999 for children under age 5. review of literature on the vaccination/autism question, and again found And yet the prevalence of autism cases still continued to rise even after that ―the body of epidemiological evidence favors rejection of a causal thimerosal was removed. Still, in an attempt to allay the growing fears, relationship between thimerosal-containing vaccines and autism.‖ They the putative thimerosal link was studied and studied and studied again. further found that: ―potential biological mechanisms for vaccine So far, there has been no credible study lending any support to the 16 induced autism that have been generated to date are only theoretical.‖ theory. The largest of these studies, which tracked all Danish children As this controversy drags on and on, the national organizations born between 1990 and 1996, compared children vaccinated with a concerned with child health continue to speak clearly (see table on page vaccine containing thimerosal to children vaccinated with a thimerosal- 12) free vaccine. If indeed thimerosal was linked to autism, one would But these reports only infuriated the anti-vaccine people. The expect a higher rate in the group who received the vaccine containing argument was deteriorating into an ―us versus them‖ conflict, and thimerosal compared to the group receiving the preservative free evidence, facts, or objective findings did not seem to matter a great vaccine. In fact, there was no difference in rates of autism occurrence 17 deal. Anahad O‘Connor and Gardiner Harris, science writers for the between the two groups. continued on page 12.…

Dancing for Autism: Irish Dancers Promote Autism Awareness and Support the Association for Autism Treatment

In April 2009, Autism Feis competition held in Kutztown, PA, dance moves and rhythmically tapping feet Awareness Month, Irish hosted by Oonagh McCune. There was a engaged all, inspiring cheering and hand- dancers in the Mid- remarkable turn-out in this charity dance clapping by the audience. It was truly a Atlantic Region of the which was offered to Irish dancers registered festive performance! We would like to US stepped forward to in competitive events held during the day thank Oonagh McCune for choosing ASAT participate in a charity long Feis. Dancers of all ages, boys and as the beneficiary of the April 2009 charity dance benefitting ASAT girls, from beginners to champions joined dance! We are very grateful to the dance at The Lady of Knock together and took to the stage side-by- school teachers and families who promoted side. Dancer after dancer performed their the event and to the many Irish dancers From left to right: Katie Godek of the O’Grady Quinlan Academy of Irish Dance treble reel in solo performances down the who chose to participate. in Bethlehem PA., Caitlin Kelly of Kerry Dance NY in line. The fast-paced whirlwind of graceful Warwick NY, Bridget Butler of the O'Grady Quinlan Academy of Irish Dance in Bethlehem PA

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Edward G. Carr, Mentor— Jane I. Carlson, Ph.D and Len Levin, Ph.D.

Mentor (men-tawr, -ter), noun. 1. A wise and trusted counselor developmental disabilities and his work has had an immeasurable or teacher; 2. An influential senior sponsor or supporter. impact on research and practice. Much will be written about his Ted was our mentor. We had the distinct honor and pleasure numerous publications, his involvement in professional activities, and of being Ted‘s graduate students at the State University of New the honors and awards he collected throughout his career. We pay a York at Stony Brook. We are among the fortunate few who were different sort of tribute to Ted; a tribute to the important role he played able to spend years working so closely with this warm, witty, in our lives, his role as mentor. It would be impossible to impart all of wonderful, brilliant man. He was our mentor in the truest sense of the lessons learned from our years working with Ted so we‘ve selected the word. Always approachable, Ted was incredibly generous and a group of ―Ted-isms‖ to share that represent a sample of the wisdom open with us as students and as people. Through his skill as a that he passed along. researcher, we learned how to think about problems, the technical aspects of planning and implementing research projects, and the “There are no treatment packages, cookbooks, or recipes.” art of technical writing. Through his incredible empathy towards Ted taught his students that analysis was paramount and there are others, we learned the importance of service, of the quality of a no short cuts. In Ted‘s uniquely entertaining, engaging, and ultimately person‘s life, and the persistence that it takes to address problems enlightening way, he would frequently mock less sophisticated that really matter. intervention agents by dramatizing a scenario (doing something like a Ted was incredibly supportive of us as young professionals. Woody Allen impression) during which a frazzled psychologist would He involved us in a variety of projects and activities to ensure that frantically flip through a textbook saying to himself, ―What am I we were well rounded as professionals. He introduced us to his supposed to do for aggression? The book says to use Time-out… colleagues and Done!‖ There would be some collaborators and laughter and then Ted would encouraged us to reach out become very serious and say to others whose work we something like, ―…A found interesting. He‘d prescription for failure.‖ The say, ―Call him/her and brilliance of this guiding introduce yourself. Tell principle goes beyond the them you‘re my student.‖ analysis of problem behavior. In When we did, we were 2009, many of us still encounter always greeted warmly so-called ABA-based programs and often regaled with a for children with autism in funny story of that which every single child in the person‘s time with Ted. program receives the same Even quite recently, more treatment package: the same than a decade out of exact augmentative graduate school, communication system; colleagues would say that unvarying teaching procedures they‘d seen Ted and when for every target objective; he heard that they worked identical visual supports/ with one of us, he would Ted Carr’s Lab (1993), from left to right: Seated: Gene McConnachie, Theresa Giacobbe- schedules; etc. Every child in sing our praises. the program receives the same In the initial wave of Greico, Jane Carlson Standing: Len Levin, Darlene Magito McLaughlin, Nancy Langdon, Christopher Smith, Scott Yarbrough, and Ted Carr recipe. Ted taught us to avoid grief that followed Ted‘s such an approach; inevitably, death, many of us who had that approach is a prescription for failure. studied with Ted reached out to one another. We communicated across the country via e-mail and telephone to once again share “The bad data point is often the most interesting.” our common experience. Many of the conversations began with In graduate school, the focus is on a set of research products and, tears and ended with laughter as we recounted the days working in as we well know, research does not always go as anticipated. The odd the lab, meetings centered around the consumption of chocolate, outlier data point can often extend a phase of a project and heighten the and our sometimes hilarious misadventures as young researchers. anxiety of a graduate student facing a deadline. Ted would say, with a We also talked about the themes that ran through our individual wry smile, ―So, what did you learn from that?‖ He would empathize relationships with Ted; the lessons that he taught us individually and then help us to understand that failure in treatment research can be and collectively that set us on a path to become mature as informative as success. Analyses of the things that don‘t go professionals. We discovered that, across the continent and quite according to plan can become the impetus for the next treatment independently from each other, we began many of our training innovation. With the signature grin returning, he would occasionally sessions with parents and direct service staff with the same lecture express this idea another way: ―There‘s a reason it‘s called re-search.‖ on systems of truth; a philosophy of science lecture that was a Ted “Write so that people who need the information can understand Carr standard and creates a context for thinking about evidence- it.” based practice. As we struggled to put into words what Ted meant Writing for an audience of colleagues is an important vehicle for to us as individuals, we were struck by the depth with which the sharing information. Equally important to Ted was writing in a way lessons imparted during those graduate school years had affected that was accessible to the person who would ultimately need to solve a our professional lives. problem, implement an intervention, teach the skill: the parent, the Many tributes will be written to Ted, and all of them well teacher, the direct service worker. Ted would have us hand over our deserved. Ted was truly a giant in the field of autism and Continued on page 18....

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Autism and Vaccines continued... more logical to abandon vaccines, which prevent illness then they – National Organizations and their positions on Vaccines: could rake in millions providing drugs for all the deadly diseases that

would come surging back. Are the government agencies conspiring

The Centers with the pharmaceutical companies to hide the fact that their policies

for Disease and their products had harmed children? Even if there were any ―Many studies have looked at whether there is a relationship Control and evidence for this conspiracy theory, why would journalists who spoke between vaccines and autism. The weight of the evidence Prevention 18 out against the vaccine autism link want to hide that horrible evil? indicates that vaccines are not associated with autism.‖ (CDC) What would they have gained by that complicity, other than the

harassment, attack and intimidation they have already suffered? Why

does this belief that vaccines caused autism persist in spite of all

Science in Autism Treatment The ―There is no conclusive scientific evidence that any part of a evidence to the contrary? vaccine or combination of vaccines causes autism, even though National It may be that some are motivated by the hope of large monetary Institutes of researchers have done many studies to answer this important question. There is also no proof that any material used to make settlements in lawsuits against vaccine makers or the government, but

Health or preserve the vaccine plays a role in causing autism. Although this cannot be the entire or only explanation for this continuing (NIH) there have been reports of studies that relate vaccines to autism, 19 conviction. In fact, there seem to be no easy answers, and no single these findings have not held up under further investigation.‖ - answer to the question of ―Why?‖ Controversies such as this are multi faceted, and go beyond the obvious motivators. They include genuine American and deeply held fears about the safety of any substance we give or Academy of ―Scientific data does not show a link between vaccines and 20 inject into young children. They include an intense need to understand, Pediatrics autism.‖ to find the reason why something has happened to a beloved child. (AAP) They include media sensationalism and simplifications, malfeasance on

the part of some, dishonesty on the part of others; the value (or lack New York Times, uncovered disturbing evidence of hostility against thereof) that that we place on scientific literacy in our culture. It would researchers who reject the vaccine/autism connection. probably take a book or two to try to examine all the social and cultural Since the [Center for Disease Control] report's release, scientists factors at play in these types of conflicts. Volume 6, Summer, 2009 and health officials have been bombarded with hostile e-mail messages But it does bear mentioning that one of the underlying problems and phone calls. Dr. McCormick, the chairwoman of the institute's that have plagued the autism community for decades is the self- panel, said she had received threatening mail claiming that she was part -mail message to the C.D.C. on Nov. 28 stated, aggrandizing zeal of people who see themselves as ―saviors‖ of the of a conspiracy…An e oppressed. What does this mean? Years and years ago, Dr. Lorna "Forgiveness is between them and God. It is my job to arrange a Wing, of the British Autism Society, coined a phrase to describe this meeting,” ….Another e-mail message, sent to the C.D.C. on Aug. 20, phenomenon. She called it the Victim/Villain/Victor syndrome. At the said, "I'd like to know how you people sleep straight in bed at night children with knowing all the lies you tell & the lives you know full well you destroy time, the phrase was used to describe the ―victims,‖ – with the poisons you push & protect with your lies." autism; the ―villains,‖ their mothers and fathers, who were held to be …In response to the villains under the flawed psychodynamic theories of that generation; the threats, C.D.C. officials have contacted the Federal Bureau of the rescuing savior therapists who Investigation and heightened security at the disease control centers.21 and then there were the ―victors‖ – came in to repair the emotional damage wrought by Mommy and Arthur Allen, writing in the online journal Slate, describes the Daddy. Today, the roles have remained; they are just filled by different mounting hysteria: actors. Today the Villain is Big Pharma/Big Government, conspiring to -mercury activists jumped on the transcript of a 2000 …Anti harm innocent children (the Victims.) The Victors are the parents and meeting at which the study was scrutinized to argue that something their supporters - celebrities, politicians and talk show hosts, all improper was going on. The transcript shows no such thing. But rushing in to save the children! the activists unleashed a public-relations campaign alleging a

government and "big pharma" cover- This reincarnation of the ―victim/villain/victor‖ roles, which have up…That, in turn, proved to proved so seductive in the past, may shed at least some light on the be eye candy for environmental groups…Anti-pollution lawyer pervasive tendency in our culture to frame this argument in terms of Robert F. Kennedy Jr. zealously jumped on the thimerosal bandwagon in an "expose" published in Salon and Rolling Stone being ―for‖ or ―against‖ the parents. In controversies such as these, … where individuals such as parents of autistic children are pitted against Even the women's division of the Methodist Church has gotten in large and faceless institutions, popular sentiment interprets any on the act, presumably on the grounds that it is fighting for social justice by decrying mercury poisoning, although there was no skepticism about therapeutic beliefs as a statement ―against parents‖

mercury poisoning, and social justice would be better met by and ―for the establishment.‖ One recent example that a mother shared with ASAT, the

promoting confidence in vaccines….Kennedy, who wrote blithely Association for Science in Autism Treatment, may suffice to make the in the Huffington Post during the trial that "overwhelming science" point: This mother reported a casual conversation with her physical had confirmed the link, continues to believe it. So does Rep. Dan therapist, who, knowing that she had Burton, R-Ind., whose circuslike hearing room aired many such an interest in autism, asked her what claims. Neither cites any solid studies, because they do not exist.22 ―I‘m for the Parents!‖ he she thought about the vaccine announced sternly. Paul Offit, M.D., has also documented multiple threats not only controversy. against the journalists, parents, and researchers who question about the ―I think the evidence does not ―I am a parent‖ the mother supposed connection between vaccines and autism, but against their support that connection,‖ she said. replied. families. Two of the journalists he interviewed, as well as he himself, The physical therapist was received threats against their children.23 clearly taken aback, and communicated his disapproval: Why? ―I‘m for the parents!‖ He announced sternly. What is going on here? Do those who resist these studies believe ―I am a parent,‖ the mother replied. that all these organizations are ―anti-parent?‖ Do they believe that all Given the history of autism, it is not surprising that popular opinion of them are making money off bad vaccines? If the pharmaceutical Continued on page 13.... industry wanted to make money off of sick children, it would seem

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Autism and Vaccines continued... tends to come down strongly on what it perceives to be the side of the Parents, however, can be just as prone as rogue researchers to an parents. After the debacle of the ―refrigerator mother‖ theory, which excessive self-confidence, lack of discernment and lack of humility:

blamed autism on cold parents, how could anyone dare question parental judgment? Nobody wants to be on the wrong side of this PR.com Interviewer: I’ve heard you say that God chose you to have an argument again. People want to be on the side of those whom they autistic child. Why? Why did God choose you? perceive as vulnerable, wronged. Hollywood has understood this, and Jenny McCarthy: It‘s amazing how God puts certain people in the packages movies and books have followed, hammering away at that theme. As that no one would possibly expect. That if I look back at all my books, I Board members of ASAT have noted before, films such as Lorenzo‘s always wondered why I became a best selling author of mommy and baby Oil, whose message was that mothers and fathers could figure out the books. That seems so funny to me. I became this mom who was telling it like it is and every book was ―The Naked Truth About… something.‖ And answer to a complex fatal disease much more effectively and efficiently it couldn‘t have happened to a better person, because I was going to come than a universe of doctors and researchers, only stoked this anti- out and give my naked honest truth about autism and have the balls to get establishment zeal. There is a cultural tendency now to always give the on these shows and say what I‘m doing. I definitely know that I was the benefit of the doubt to ―the little guy,‖ over anyone having anything to one!27 do with any institution, corporation, or agency. Combine that cultural inclination with the fact that the media is not PR.com: What has been your greatest lesson in this whole experience, explaining the science and the general population does not always have dealing with Evan’s autism? either the time or the background to go deeply into the science, and the Jenny McCarthy: My greatest lesson is always to trust the mommy instinct. Always trust yourself. Always trust the gut instinct. It will never let you result is predictable. As of this moment, the ―vaccinations cause down. autism‖ belief has a new champion, Jenny McCarthy, whom the media identifies as ―the actress and former Playboy model,‖ who, convinced Unfortunately, ―gut instinct‖ has let parents down, and will that both vaccines and digestive problems had a part to play in her son‘s continue to do so unless it is counterbalanced by a healthy dose of development of autism, wrote a book on the topic - a book that was reason, skepticism and discernment. Parents have been taken in by self- embraced uncritically by talk show hosts and television producers far aggrandizing saviors and false promises ever since autism was and wide. In her appearances in these shows she is rarely challenged; identified. One glance at the history of autism is enough to deflate the rather her ideas about vaccines, ―yeast overgrowth,‖ ―crystal notion that ―gut instinct‖ is a reliable guide to treatment choices. One children,‖24 ―indigo moms,‖25 her son‘s ―hypersensitivity to air and glance at the booming ―alternative medicine‖ industry in this country water‖ etc., are accorded rapt attention and respect. indicates that there has been and probably always will be a market for National Public Radio, which prides itself on its intellectualism, fringe therapies, promises of miracle cures, and snake oil salesmen28 – offers more of the same emotion-charged ―reporting.‖ Recently, a in short, for big promises backed by slim evidence. ASAT has been special federal court rejected petitioners‘ arguments in three cases tracking this problem for years, speaking out about the outrageous where families were claiming that vaccines had caused autism in their therapeutic claims in the autism world – often inspiring some hate mail children.26 This was all over the news, not only because of the of our own, alas. Nevertheless, we, the parents and professionals of astonishing fact of having a vaccine tried in a court of law, but because ASAT, continue to fight for a rational, science-based approach to the three cases were closely watched by thousands of parents waiting to autism. bring their own lawsuits, and thousands of other interested parties, Not that the fight is easy, or anywhere close to being won. People representing both sides of the vaccine/autism debate. Now, the mandate seem much more compelled to accept at face value what celebrities and of a federal court is to evaluate evidence placed before it and reach a models tell them about the genesis of autism rather than anyone who judgment based on the merits of the evidence and strength of the drones on with boring facts and figures about epidemiology, argument. The federal court not only rejected petitioners‘ argument in biochemistry or neurology. A researcher who pays young children to the three cases; it did so resoundingly. Here is language from just one participate in a fatally flawed study is more credible, apparently, than of the rulings: all the scientists of the CDC, NIH, or the American Academy of Pediatrics combined. Politicians who have no grasp of the research …the evidence was overwhelmingly contrary to the petitioners‘ contentions. The expert grandstand and pontificate, spreading fallacies and fomenting rage. witnesses presented by the respondent were far better qualified, far more experi- Women‘s church groups decide that vaccines are an instrument of enced, and far more persuasive than the petitioners‘ experts, concerning most of injustice in the world. Parents fight with each other on Internet chat the key points. The numerous medical studies concerning these issues, per- rooms, only adding to the bewildering pain that many are dealing with formed by medical scientists worldwide, have come down strongly against the already as they try to figure out what is best for their kids. petitioners‘ contentions. Considering all of the evidence, I found that the petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing But is this really the way we should be framing this discussion, immune dysfunction, or that the MMR vaccine can contribute to causing either autism conducting this conversation? Does this dangerous dismissal of science or gastrointestinal dysfunction. and research and medical training and keen minds and authentic authority really help our children? Do we really want these questions being determined by shouting matches rather than rational objective Upon release of these decisions, NPR responded with an interview discussion of the truth? As Daniel Patrick Moynihan once said: of a journalist discussing something he called ―the emotional truth‖ of ―Everyone is entitled to his own opinion, but nobody is entitled to his parents versus the ―scientific truth‖ of research. A listener would not be own facts.” The fact is that the vaccine/autism connection has been faulted for wondering if he was positing some kind of equivalency about as thoroughly debunked as it is possible to debunk anything. between these two concepts. What exactly is ―emotional truth?‖ The From large scale population studies to individual case analyses, nobody journalist never defined this, but even granting that there is such a thing has succeeded in providing anywhere near convincing evidence of any as ―emotional truth,‖ perhaps this is something more germane to the causative link between the two. universe of feelings and beliefs rather than to objective facts about the human nervous system and the effect of vaccinations on that system. Where do we go from here? Cultivating discernment Another disturbing characteristic of media coverage of this federal All parents, caregivers, educators and professionals involved in the ruling was that at least a few journalists kept talking about how ―this care and education of people with autism want to make sure that they ruling has dealt a major blow to parents‖ - once again reinforcing the are making the best possible decisions for a child, until he or she might assumption that all parents believed in this theory and that to attack the Continued on page 14…. theory was to attack parents. ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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become capable of making those decisions independently. How do 2. Let us become more aware of what constitutes “good science” we go about making sure that our decision making is informed as and what constitutes pseudoscience. Since people can be fallible, much as possible not only by love and compassion, but by truth? and everyone can make mistakes, we need to rely on some system of Here are just a few recommendations from ASAT, which has been fact-finding in the real world. The scientific method is not designed involved for over a decade now in the struggle to increase effective to answer some questions, such as ―Does God exist?‖ or ―What is intervention and education, and to bring science-based accountability love?‖ but it is designed to answer questions about biology and to the search for autism‘s causes and treatments. By the way, it is chemistry, the brain and the body. Unfortunately, there is good perhaps important to mention that our Board and Advisory Board science and then there is junk science, and in a world of instant consists of parents and family members of people who have autism, information and competing claims, we all need to become a bit more

Science in Autism Treatment professionals who are involved in clinical work with children and adept at discriminating between the two. Parents and ―laypeople‖ are adults who have autism, researchers whose knowledge of this field taking on more and more of their own research into medical, runs deep, and other caring citizens. educational and treatment issues in autism, which can be empowering and good, or it can lead to and prolong yet more disasters like the 1. We need to focus on facts, not on identity politics: It is not secretin debacle, the ongoing scandal of facilitated communication or helpful to frame this discussion as: ―You‘re either on the parents‘ the current vaccine controversy. What constitutes ―good science?" side, or you‘re not.‖ First of all, as mentioned already, not all That is another question that would take a few tomes to answer, but parents have bought into this vaccine myth: some are appalled at here are at least some hallmarks of strong scientific research (Material seeing the conversation hijacked by hysteria and self-promotion rather in italics is taken verbatim from an article by Gina Green, PhD, than by a rational consideration of facts and evidence. Secondly, it is Advisory Board member of ASAT; explanatory comments are by not supportive of parents, it‘s not helpful to them, it‘s not ―being on ASAT editors.)30 their side‖ to keep propagating fallacies about autism. Thirdly, The least ambiguous evidence that a treatment is effective is nobody, including parents, is infallible. Over the years, parents have evidence that includes: both been victimized by false expertise and they have helped to Controls for several alternative explanations. This means that a sustain such false expertise, for instance, by supporting all kinds of child‘s improvement may or may not have been due to the

Volume 6, Summer, 2009 dubious treatments that eventually were discredited. The reality is treatment under consideration, and researchers will have that we all have to be very humble about how much we know and ―controlled‖ for those explanations – eliminated them one don‘t know. Professionals who abuse their authority and inflate their by one in a systematic fashion so that only the one expertise should not be trusted to make pronouncements about autism explanation remains. or its treatments. Neither should we ―believe‖ in every theory that a A comparison of treatment outcome with outcomes that occur parent proposes on the Internet or in People Magazine. Bruno with no treatment or other treatments. One has to be sure Bettelheim did not know what he was talking about when it came to that the outcome observed is a direct result of the treatment autism genesis or treatment but neither does Jenny McCarthy, whose under question, and is not something that would have knowledge about the topic stems, as she asserts, ―from the University occurred even if no treatment were provided or another of Google.‖29 treatment were provided. Continued on page 16… Chelation Treatment for Children with Autism continued…. Typically, physicians who prescribe about introducing a drug intervention such as References 1. Nelson, K. B., & Bauman, M. L. (2003). Thimerosal chelation will test baseline levels of heavy chelation must weigh risks to benefits. There and autism? Pediatrics, 111(3), 674-679. metals in the urine of patients and then test are no known scientifically-validated benefits 2. Stehr-Green, P., Tull, P., Stellfeld, M., Mortenson, P. the urine again after the administration of the of the administration of chelating agents, yet B., & Simpson, D. (2003). Autism and thimerosal- chelation drug. However, this may not be a there are some reported risks. Known side containing vaccines: Lack of consistent evidence valid assessment. One published report of a effects of these chemicals include: Two for an association. American Journal of child with environmental mercury toxicity reported deaths (presumably from Preventative Medicine, 25(2), 101-106. (presenting with acrodynia, or burning pain hypocalcemia induced by using an incorrect 3. Gattineni, J., Weiser, S., Becker, A. M., & Baum, M. associated with mercury toxicity) showed drug administered too quickly); (2007). Mercury intoxication: Lack of correlation between symptoms and levels. Clinical pediatrics, that urinary level did not reflect clinical hypocalcemia; and depletion of beneficial 3 46(9), 844-846. improvement after chelation . Another study metals (zinc, iron). Ten percent of DMSA- 4. Soden, S. E., Lowry, J.A., Garrison, C. B., & of children with autism concluded that since treated patients show evidence of Wasserman, G. S. (2007). 24-Hour Provoked Urine DMSA chelation did not lead to high gastrointestinal issues including elevation in Excretion Test for Heavy Metals in Children with excreted levels of mercury, the children with liver enzymes. In short, there is not enough Autism and Typically Developing Controls, a Pilot autism did not have a high body burden of scientific evidence available at this time to Study. Clin Toxicol (Phila), 45(5), 476-481. the metal4. advocate a role for chelation of heavy metals 5. Patel, K., & Curtis, L. T. (2007), A comprehensive A recent search of the scientific literature in the treatment of autism, and there is approach to treating autism and attention-deficit hyperactivity disorder: A prepilot study. Journal via Medline found no randomized controlled potential for adverse side effects. of Alternative and Complementary Medicine, (New trials of the use of chelation for the treatment York, N.Y.), 13 (10), 1091-1097. of autism. A proposed study that was to be Joyce Elizabeth Mauk, M.D. 6. Kidd, P. M. (2002). Autism, an extreme challenge to funded by the NIMH was cancelled. Several Advisory Board Member, integrative medicine. Part 2: Medical management. papers outlining only the opinion of the Association for Science in Autism Treatment Alternative Medicine Review: A Journal of Clinical authors (listed as ―pre-pilot‖) advocate a role President/CEO and Medical Director Therapeutic, 7(6), 472-499. for chelation as a treatment for autism based Child Study Center, Fort Worth, Texas on personal experience. 5,6 Individuals or parents making decisions

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ASAT is proud There are many organizations, who, ASAT‘s sponsors have indicated their along with ASAT, are concerned about support of the following tenets: to unveil the 2009…. the plethora of treatments that lack 1. That all treatments for individuals Real Science, Real Hope scientific support - and the burden this with autism should be guided by the then places on families and service best available scientific information. Sponsorship Initiative providers who are struggling to make 2. That service providers have a decisions about treatment. The responsibility to rely on science- ASAT believes that individuals with following organizations have indicated based treatments. autism have the right to effective their support for ASAT and its mission 3. That service providers should take treatments that are scientifically to disseminate accurate, scientifically- steps necessary to help consumers demonstrated to make meaningful, sound information about autism and differentiate scientifically-validated positive change in their lives. It can be treatments for autism, and to improve treatments from those that are not. challenging for families to find access to effective, science-based accurate information about the efficacy treatments for all people with autism, 4. That consumers should be informed of various interventions for autism. For regardless of age, severity of condition, that any treatment which is not that reason, central to ASAT‘s mission, income or place of residence. scientifically supported should be is the goal of disseminating accurate pursued with great caution. information about autism treatments. These sponsorships not only provide 5. That objective data should be used to ASAT works toward a time when all financial support used specifically for guide clinical decision making. families will be empowered to identify our dissemination efforts, but also send and choose the most effective, a clear message that ASAT's vision is The tasks of educating the public about scientifically-validated interventions shared by others within the professional scientifically-validated intervention and for their child, and all providers can be community. The funds provided by the countering pseudoscience are daunting guided by science when selecting and ASAT sponsors will help support a ones, and ASAT appreciates the implementing their interventions. number of directed efforts undertaken support of our sponsors. by ASAT this year (e.g., a pediatrician education program, a journalist/ If you are interested in becoming a media education program, and sponsor, please visit the sponsor page public awareness of our newsletter on our website at http://asatonline.org/ and website). about_asat/sponsors.htm

Participating Organizations in Real Science, Real Hope ASAT’s Mission

CHAMPION $2,000 PATRON $200 Our mission is to disseminate Ask a Behaviorist Beacon Services accurate, scientifically sound Behavioral Directions information about autism and BENEFACTOR $1000 Brooklyn Autism Center Academy treatments for autism and to Rethink Autism Connecticut Center for Child improve access to effective, Development (CCCD) ALLIANCE $500 Educational Partnership for Instructing science-based treatments for all Alpine Learning Group, Inc. Children (EPIC) people with autism, regardless of Different Roads to Learning Evergreen Center age, severity of condition, income Eden II Programs Institute for Educational Planning or place of residence. ELIJA School Lizard Children‘s Learning Centre New England Center for Children Reed Academy New Haven Learning Centre for Room to Grow Children SKF Books Virginia Institute of Autism Somerset Hills Learning Institute

IMPORTANT DISCLAIMER: ASAT has no formal relationship with any of the sponsor organizations. Furthermore, their stated endorsement of the above tenets is not verified or monitored by ASAT. Although ASAT expects that all sponsoring organizations will act in accordance with the above statements, ASAT does not assume responsibility for ensuring that sponsoring organizations engage in behavior that is consistently congruent with the statements above. ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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True experimental research design. This does not mean us be careful about accepting yet another ―miracle breakthrough‖ testimonials or personal stories, compelling though they treatment, especially one that springs from yet another astonishing may be. True experimental research design usually includes and improbable hypothesis about causation. From the wasteland of careful baseline observations and descriptions of the Freudian psychoanalysis for autistic children to the scandal of symptoms, behavior or phenomenon that is being evaluated. facilitated communication; from the fads of auditory integration It includes observations about antecedent conditions, the therapy, vitamin therapy, dolphin therapy, radical diets, hyperbaric environment under which the behavior is occurring or the oxygen chambers, secretin therapy, holding therapy, drum therapy, test is being conducted, as well as the systematic and now chelation therapy there have been no fewer than 100 – that is elimination of all possible alternative explanations for 100 – ―alternative treatments‖ offered for sale on the Internet and

Science in Autism Treatment effects reported. It entails accurate analysis and reporting of embraced by parents. The vast majority of these treatments have independent variables that may have affected experimental almost no peer reviewed research to speak of, no credible replication, outcomes, and many other types of controls and procedures no application whatsoever to the symptoms of autism. True, some of to safeguard the experiment‘s internal validity. them may be fairly harmless: many children (those who have autism Replication by independent investigators. Finally, strong and and those who do not) would delight in the experience of swimming robust research will have included ―external validity,‖ or with dolphins, whether or not there is any peer reviewed research some capacity for generalization ―which refers to the indicating any effect on any symptom of autism. But some of these confidence with which the results of an experiment can be interventions have been shown to be most harmful, and they bleed applied to people and situations other than those involved time and money and resources away from families. Withholding in the experiment.‖ In the case of the Wakefield research vaccinations can and does have real repercussions not only for our there has been no external validity or generalization of own children but for others‘ children as well. results because there was no internal validity of his Real progress has been made and will continue to be made experiments to begin with. toward that goal of giving all children greater independence, language and the ability to make choices and decisions for themselves. But that And what does “most ambiguous evidence” look like? Weak or progress will continue only if we learn from history. Let us be careful

Volume 6, Summer, 2009 speculative evidence would usually be based on: about accepting at face value yet another astonishing new theory about autism‘s genesis, a theory that contradicts all the careful Subjective reports (testimonials, anecdotes, personal accounts or research that has already been built up, painstakingly, by reputable uncontrolled observations) researchers, slowly solving the puzzle of this mysterious condition. No comparisons In the current controversy over vaccinations, journalists, No measurements or indirect measurements only politicians, parents and celebrities would do well to pause a moment, Case studies, descriptive research, no true experimental design and reflect: Are we helping or hurting parents when we accept,

without extremely careful weighing of all available evidence, yet But if one still feels unsure about the quality of the research supporting a certain treatment, it may help to have the checklists (on p another sensational new ―discovery‖ in autism? Are we helping or hurting children with autism? As a recent article summarizing the 17) on hand. The first is from the extremely valuable site controversy has stated: www.quackwatch.org. founded by Stephen Barrett, M.D., an internationally recognized champion of scientific literacy and a ―It is bad enough that the vaccine autism scare has undermined one of the greatest successes of preventive medicine and consumer advocate. The origin of the second is unclear, but may have terrified many new parents. Most tragic of all, it has diverted appeared years ago in a pamphlet published by the American Arthritis Foundation - apparently because arthritis, like autism, is also subject attention and millions of dollars away from finding [autism‘s] true causes and cures.31 to its own parade of miracle treatments and cures. ‖ Parents and scientists need the expertise of the other if we are to

maximize the growth and development of children who happen to be 3. And finally, and perhaps most importantly, we need to diagnosed with autism. Each group deserves respect when they speak understand that correlation does not equal causation. Because autism typically manifests itself when a child is around one to three about what they know and remain humble about what they don‘t. Parents know their child. Today, when treatments still consist largely years old, the same age range at which most vaccines are of behavioral/educational intervention, parents can and must be seen administered, this correlation reinforces, for many, the certainty of as vital partners in the process of helping a child maximize his or her causation. But ―my child was perfectly normal and then he had a potential for self expression and independence. Scientists, researchers vaccination and then became autistic‖ is not proof of anything; rather, and clinicians, meanwhile, have their own authority, an authority that it indicates confusion about coincidence and causality. If ice cream is critical to an increased understanding of causes and treatments. sales increase in August, and crime rates go up in August, it‘s not that They too should be listened to with respect and attention. Science and ice cream causes crime rates to rise. Operating under such a (false) parental love can work hand in hand when each is willing to assumption, we should ban any medication, any surgery, any antibiotic, any dental intervention, any hospitalization, any baby dose acknowledge the scope and the limits of each other‘s experience. Autism is a developmental, neurological condition, ranging from mild of Tylenol or aspirin within the first two to three years of life, since differences to devastatingly serious impairment in functioning. Only that is when children first begin to manifest signs of autism. through careful research - not popular opinion, not rogue The bottom line is this: In Japan, they took away the MMR - will we continue to grow in our understanding. It is vaccine, they took away the thimerosal, and the rates of autism did not ―researchers‖ scientific research, coupled with the undying and unconditional love decrease, they increased. It is time to lay this straw dog to rest. of parents, that will continue to forge an enlightened path as we seek

to help the children and families who grapple with this diagnosis. Conclusion: The vaccine controversy is only one more chapter in a long and Footnotes 1 For a summary of this evidence see page 5 of this essay. difficult history that will be written one day about the genesis, 2 Honda, Hideo et al. (2005). No effect of MMR withdrawal on the incidence diagnosis, and treatment of autism in our country and indeed in the of autism: a total population study. Journal of Child Psychology and world. Tragically, that history has been colored by a long parade of Psychiatry, 46:6, 572–579 fads, fallacies, dubious and at times very harmful interventions. Let Continued on page 17... ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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A. COMPARISON OF SCIENCE AND PSEUDOSCIENCE Science Pseudoscience Their findings are expressed primarily through scientific journals that are The literature is aimed at the general public. There is no review, no standards, no pre- peer-reviewed and maintain rigorous standards for honesty and accuracy. publication verification, no demand for accuracy and precision. Reproducible results are demanded; experiments must be precisely Results cannot be reproduced or verified. Studies, if any, are always so vaguely described so that they can be duplicated exactly or improved upon. described that one can't figure out what was done or how it was done. Failures are searched for and studied closely, because incorrect theories Failures are ignored, excused, hidden, lied about, discounted, explained away, can often make correct predictions by accident, but no correct theory will rationalized, forgotten, avoided at all costs. make incorrect predictions. As time goes on, more and more is learned about the physical processes No physical phenomena or processes are ever found or studied. No progress is made; under study. nothing concrete is learned. Convinces by appeal to the evidence, by arguments based upon logical Convinces by appeal to faith and belief. Pseudoscience has a strong quasi-religious and/or mathematical reasoning, by making the best case the data permit. element: it tries to convert, not to convince. You are to believe in spite of the facts, When new evidence contradicts old ideas, they are abandoned. not because of them. The original idea is never abandoned, whatever the evidence. Does not advocate or market unproven practices or products. Generally earns some or all of his living by selling questionable products (such as books, courses, and dietary supplements) and/or pseudoscientific services.

B. PSEUDOSCIENTIFIC THERAPIES: SOME WARNING SIGNS  High ―success rates‖ are claimed.  Catchy, emotionally appealing slogans are used in marketing the therapy.  Rapid effects are promised.  Belief and faith are said to be necessary for the therapy to ―work.‖  The therapy is said to be effective for many symptoms or disorders.  Skepticism and critical evaluation are said to make the therapy‘s effects  The theory behind the therapy contradicts objective knowledge and sometimes evaporate. common sense.  Promoters resist objective evaluation and scrutiny of the therapy by others.  The therapy is said to be easy to administer, requiring little training or expertise.  Negative findings from scientific studies are ignored or dismissed.  Other, proven treatments are said to be unnecessary, inferior or harmful.  Critics and scientific investigators are often met with hostility, and are accused  Promoters of the therapy are working outside their area of expertise. of persecuting the promoters, being ―closed minded,‖ or having some ulterior motive for debunking the therapy.  Testimonials, anecdotes, or personal accounts are offered in support of claims about the therapy‘s effectiveness, but little or no objective evidence is produced.

Autism and Vaccines continued... 3 For what is probably the most comprehensive discussion available today of the indicating that vaccines are a cause of autism. That is a complete mischaracterization of pharmacological/biomedical research into the question of vaccines and autism, see the findings of the case and a complete mischaracterization of any of the science that we Autism‘s False Prophets, by Paul A. Offit, MD. Columbia University Press. September have at our disposal today.‖ 2008. 19 http://www.nichd.nih.gov/publications/pubs/autism/mmr 4 Offit, Paul, Autism’s False Prophets. Columbia University Press, September 2008. pp 20 http://www.aap.org/healthtopics/autism.cfm 26-27. 21 O‘Connor, A. and Harris, Gardiner. On Autism‘s Cause, It‘s Parents vs. Research: 5 Begley, Sharon with Jeneen Interfandi: ―Anatomy of a Scare.‖ Newsweek. Mar 2, New York Times. June 25, 2005 2009. 22 Allen, Arthur. True Believers: Why there‘s no dispelling the myth that vaccines cause 6 Researchers Reject Famous MMR-Autism Study. Jennifer Warner. WebMD Medical autism. Slate. July 29 2007. News. March 2004 23Offit, op.cit. pp 116-119. See also: Donald G. McNeil, Jr. ―Book is rallying resistance 7 MMR: Key Dates in the Crisis. Brian Deer. The Sunday Times. February 9, 2009 to anti-vaccine crusade.‖ New York Times. Jan. 12, 2009. http:// 8 Richard Horton. Quoted in BBC Online News, February 22, 2004. www.nytimes.com/2009/01/13/health/13auti. 9 Murch SH, Anthony A, Casson DH, et al (2004). "Retraction of an interpretation". 24 Jenny McCarthy. Louder Than Words, a Mother‘s Journey in Healing Autism. Plume. Lancet 363 (9411). March 2004. (reprint edition) 2008. 10 Deer, Brian: The MMR Investigation: Summary of allegations concerning serious 25 Crystal Children and Indigo children (along with Crystal and Indigo adults), originate professional misconduct on the part of Andrew Wakefield and colleagues: Fitness to in New Age beliefs. Here is one description taken from a site called StarChild: ―Crystal Practice Panel. http://briandeer.com/mmr/lancet-summary.htm Children began to appear on the planet from about 2000, although some date them 11Offit, Paul. Op. cit. p. 52 slightly earlier. These are extremely powerful children, whose main purpose is to take us 12Deer, Brian, Hidden Records show MMR truth. The Sunday Times. February 8, 2009 to the next level in our evolution, and reveal to us our inner power and divinity. They 13Ibid. function as a group consciousness rather than as individuals, and they live by the" Law 14 Dr. Wakefield, along with Dr. Arthur Krigsman, Dr. Bryan Jepson, and Dr. Doreen of One" or Unity Consciousness.‖ Crystal and Indigo people are said to have an aura, Granpeesheh, offers treatment for children with developmental disabilities at and be able to read minds. ―Thoughtful House‖ in Austin Texas. 26 United States Court of Federal Claims. Autism Decisions and Background 15 United States Patent Application: US 6534259BI. Wakefield. March 18, 2003. Information. Feb. 12, 2009. http://www.uscfc.uscourts.gov/node/5026 16 National Network for Immunization Information. March 2008. Mercury in Vaccines: 27 PR.com: Alison Kugel. Interview with Jenny McCarthy. October 9, 2007. Summary of Articles. http://www.immunizationinfo.org/immunization_science. 28 See: Margaret Taylor Singer and Janja Lalich: Crazy Therapies; What are they? Do 17 Hveiid, A. Stellfeld M., Wohlfahrt, J. Melbye, M. Association between thimerosal they work? Jossey Bass. 1996. containing vaccine and autism. Danish Epidemiological Science Centre, Department of 29 PR.com: Alison Kugel. Op. cit. Epidemiology Research, Statens Serum Institut, Copenhagen, Denmark. Journal of the 30 Gina Green. Evaluating Claims about Treatments for Autism. in: Behavioral American Medical Association, (JAMA) 2003 Oct 1; 290 (13):1763-6 Intervention for Young Children with Autism. A Manual for Parents and Professionals. 18See http:/ww.cdc.gov Commenting on the Hannah Poling case, which the anti-vaccine C.Maurice, S.C. Luce and G.Green, Eds. Pro Ed. 1996. crowd hail as a ―concession‖ by the government, Dr. Julie L. Gerberding, director of the 31Begley, Sharon, ―Anatomy of a Scare.‖ op.cit. CDC, said ―Let me be very clear that the government has made absolutely no statement ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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Edward G. Carr, Mentor— continued…. papers to other students from different At the beginning of every semester, our lectures and workshops today. It orientations, people in the community, our in every course that Ted taught, he empowers parents as they are faced with parents, to ensure that the concepts being described the process by which we contradictory recommendations from presented were clear and comprehensible. determine whether or not something is professionals. It inspires students and ―If a classroom teacher or parent can‘t ―true.‖ He talked about three systems of staff to pursue careers dedicated to understand what you‘ve done, you haven‘t truth: the Authoritarian system, the evidence-based practice. It is the done anything.‖ Phenomenological system, and the philosophical foundation on which this Empirical system. When we adhere to the organization, the Association for Science “Systems of truth” Authoritarian system of truth, we believe in Autism Treatment, is based. Ted was a scientist working in an that a statement is true because an expert Ted‘s death leaves a huge hole in our applied field with interdisciplinary teams or reliable source expresses that the

Science in Autism Treatment lives. He won‘t be there now to bounce whose members were often not trained in statement is fact. When we adhere to the around a research idea or to offer advice the methodologies of science. Ted was a Phenomenological system of truth, we on a professional problem, but his voice psychologist whose broad range of believe that a statement is true because will continue to inform the work we do colleagues in the larger field of our experience, albeit, our subjective every day. He‘s shaped the way we psychology were comprised of many experience, confirms that the statement is analyze problems, the way we design different orientations, many not rooted in true. When we adhere to the Empirical intervention strategies, the way we a scientist/practitioner model. Ted was an system of truth, we believe that a communicate about our work, and the advocate working with families who were statement is true because direct service we provide to people with autism desperate for assistance and relief and measurement following the systematic and their families. His teachings have who would often turn to ―alternative‖ manipulation of independent variables become part of our DNA; who we are as treatments with the hope of obtaining yields reliable data that strongly suggest professionals and as people. For this we better outcomes for their children. While that the statement is true. In other words, are forever in his debt. Ted‘s diplomacy skills with respect to when we adhere to the Empirical system Ted Carr was our mentor; he was our navigating the dynamics of an of truth, we rely on results obtained via friend.

Volume 6, Summer, 2009 interdisciplinary team meeting, for experimentation and the scientific method example, were unparalleled, we can only to guide our decision-making with respect Jane I. Carlson, Ph.D., BCBA-D presume that these situations were some to selecting interventions and modifying The Groden Center of the setting events for his semi-annual systems to achieve our desired outcomes. lecture on systems of truth. As we mentioned above, many of Len Levin, Ph.D. Ted‘s students still use this taxonomy in Coyne and Associates Board Member Bio: Mary Beth Walsh, Ph.D.—continued.... Q: What experience do you have with autism evidence-based schools for children with Brazil, and I am always struck by the treatment? How do you think ASAT can autism, and including great graduate programs tremendous lengths parents are willing to go to help with that? that train teachers in science based intervention in pursuit of effective intervention. Too often A: When my son was diagnosed, I was very for autism. This abundance of resources is not the scarcity of science-based intervention for lucky to make contact with a gifted and kind the norm. It’s my personal belief that those of children with autism fuels parental desperation behavior analyst (Dr. Sharon Reeve, BCBA-D, us who have been able to access excellent for “anything that works” and allows for the of ASAT’s Advisory Board) who helped me services for our children have an obligation to proliferation of quack-based interventions and educate myself about autism treatment and help other parents. opportunists willing to prey on vulnerable science, and who, more importantly, helped my As Chair of the ASAT Website Committee, I families, especially during the early, confusing, son tremendously and set our whole family on am privileged to be able to read and respond to anxiety-filled years immediately post-diagnosis. the right path. But over the last eight years I’ve the emails that come into the Reading the emails we receive at ASAT always come to realize my family’s story is extremely [email protected] account from parents recommits me to our mission to provide unusual. Where we live in New Jersey, we are around the globe, and I know that most families accurate information about the science behind lucky to have a lot of supports, from a respected have a much harder time finding evidence based proposed autism treatments, and to work to advocacy organization committed to science, treatment for autism, or even getting to see what increase access to effective, evidence-based Autism NJ www.autismnj.org to some excellent this looks like in real life. At ASAT we receive interventions for all individuals with ASDs. emails from parents in Oman, Bangladesh, and Consumer Corner continued…. a description of the various theoretical perspectives on autism, autism. Parents armed with skills in identifying and understanding information about participating in research, and some sample sound research studies will also prompt educators and other research articles with embedded sidebar comments that label the service providers to use evidence-based practices and perhaps various sections of the study. The worksheets are invaluable tools exercise greater scrutiny when considering the dozens of for culling out essential information and include both a basic and treatments that lack scientific support. If parents are able to better more detailed template. access and understand research, they will be in a better position to I am grateful that OAR has compiled such a wonderful make sound choices to help their children realize their fullest resource for parents. This guide is several years old, but it potential reliable. An educated consumer base will undoubtedly continues to be useful to those parents beginning their search as support the advancement of both science and practice. well as those wishing to delve deeper into research. Although this A free copy of can be downloaded guide is clearly targeted toward parents, I believe this resource will A Parent’s Guide to Research by visiting the following link: also be immensely helpful to teachers and other providers learning http://www.researchautism.org/resources/reading/index.asp to navigate the research on autism.

As a special education teacher, I am well aware of the vast Stacey Sipe, Special Education Teacher ` array of treatments that are offered to parents of children with Granite Street Elementary School, Millinocket, Maine ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

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Comments on Spreckley and Boyd (2009) continued…. whether investigated via group comparison or single-subject research, demonstrations of a relationship. Spreckley and Boyd‘s putatively along a continuum from ―well established‖ to ―probably efficacious‖ to scientific claim could be exploited to argue against providing behavioral ―experimental‖ (Detrich, 2008, p. 29). These standards are merely intervention, and in the supposed absence of evidence, authority is left as arbitrary conventions, a matter of consensus within a given field, and the only arbiter of treatment decisions.

with respect to single-subject research we are ―just beginning the process of determining the professional standards that allow Jonathan W. Kimball, Ph.D., BCBA demonstration of an evidence-based practice‖ for special education Woodfords Family Services (Horner et al., 2005). Horner et al. (2005) suggested five criteria that Portland, Maine must be met in order for an intervention that has been effective in single References -subject research to be considered evidence-based, one of which Baer, D. M. (2005). Letters to a Lawyer. In W. L. Heward, T. E. Heron, proposes that: N. A. Neef, S. M. Peterson, D. M. Sainato, G. Cartledge, R. Gardner ―A practice may be considered evidence based when (a) a minimum III, L. D. Peterson, S. B. Hersh, and J. C. Dardig (Eds.), Focus on of five single-subject studies that meet minimally acceptable behavior analysis in education: Achievements, challenges, and methodological criteria and document experimental control have been opportunities. Columbus, OH: Pearson. published in peer-reviewed journals, (b) the studies are conducted by at Detrich, R. (2008). Evidence-based, empirically supported, or best least three different researchers across at least three different practice? A guide for the scientist-practitioner. In J. K. Luiselli, D. C. geographical locations, and (c) the five or more studies include a total Russo, W. P. Christian, and S. M. Wilczynski (Eds.), Effective of at least 20 participants (p. 176).‖ practices for children with autism. New York: Oxford University Parents, providers, and policy makers will find very many specific Press. behavioral interventions that meet this standard. Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive It is the dual standards and models of research—threshold vs. behavioral treatment at school for 4- to 7-year-old children with hierarchical, actuarial comparisons of programs vs. single-subject autism: A 1-year comparison controlled study. Behavior evaluation of interventions—that the much-cited National Research Modification, 26, 49-68. Council (NRC) report (2001) attempted to reconcile. On one hand, the Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2007). Outcome for report applied a very high threshold standard to evidence itself, and children with autism who began intensive behavioral treatment even Spreckley and Boyd were correct that there is negligible RCT between ages 4 and 7: A comparison controlled study. Behavior research on any general approach to teaching children with autism (in Modification, 31, 264-278 fact, for many putative treatments there is no research at all). On the Horner, R. H., Carr, E. G., Halle, J., McGee, G., Odom, S., & Wolery, M. other hand, the NRC applied a hierarchical standard to specific (2005). The use of single-subject research to identify evidence-based instructional interventions, and on this basis made numerous more or practice in special education. Exceptional Children, 71, 165-179. less qualified recommendations, almost all of which happened to be Johnston, J. M. (1988). Strategic and tactical limits of comparison studies. supported by behavioral research. It is not necessarily that these The Behavior Analyst, 11, 1-9. interventions are inherently superior to other methods—any judgment Matson, J. L., Benavidez, D. A., Compton, L. S., Paclawskyj, T. & of that kind is indeed premature. Rather, they are simply supported by a Baglio, C. (1996). Behavioral treatment of autistic persons: A review preponderance of evidence that meets conventional standards for being of research from 1980 to the present. Research in Developmental well-established and that does, therefore, offer firm enough footing for Disabilities, 17, 433-465. policy. In suggesting otherwise, Spreckley and Boyd‘s logic would National Research Council. (2001). Educating children with autism. seem to be not only unsupported by conventions of psychology and Committee on Educational Interventions for Children with Autism, special education, but also, in proffering a nearly impossible standard of Division of Behavioral and Social Sciences and Education. evidence, potentially harmful. Tobacco companies once chose to adopt Washington, D.C.: National Academy Press. a similarly impossible standard and on the basis of that self-serving Reichow, B. & Wolery, M. (2009). Comprehensive synthesis of early choice disputed that there was adequate ―evidence‖ that cigarettes intensive behavioral interventions for young children with autism ―caused‖ lung cancer—despite compelling and continuously mounting based on the UCLA young autism project model. Journal of Autism and Developmental Disorders, 39, 23-41. Rogers, S. J. & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38. In addition to our Advisory Board, a number of individuals lend their time and Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment talents to support ASAT's mission and initiatives. for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417-438. ASAT Newsletter ASAT Finances Committee Schreibman, L. (2005). The science and fiction of autism. Cambridge, Lori Bechner, M.A., BCBA Paul E. J. Pangburn, B.S. MA: Harvard University Press. Kate Fiske, Ph.D., BCBA Sherer, M. R., & Schreibman, L. (2005). Individual behavioral profiles Germaine Ibrahim, M.Ed. ASATonline.org Kerry Ann Conde, B.A. and predictors of treatment effectiveness for children with autism. ASAT Public Relations Amanda Wadsworth, M.S. Ed. Journal of Consulting and Clinical Psychology, 73, 525-538. Diane Carballo, B.S. Smith, T., Groen, A. D., & Wynn, J. W. (2000). Randomized trial of Jennifer Hieminga, M.Ed. Media Watch intensive early intervention for children with pervasive Lewis Mazzone, M.A. Geoff Debery, M.A., BCBA developmental disorder. American Journal on Mental Retardation, Rebecca McKee, M.S., Ed. Florence DiGennarro Reed, Ph.D., BCBA 105, 269-285. Audrey Meissner, M.Ed., BCBA Daphna El-Roy, Ph.D., BCBA Spreckley, M., & Boyd, R. (2009, March). Efficacy of applied behavioral Sage Rose, Ph.D. Regina Claypool-Frey, B.S. intervention in preschool children with autism for improving Connie Russo, Ph.D. Hannah Hoch, Ph.D., BCBA Sharon Reeve, Ph.D., BCBA cognitive, language, and adaptive behavior: A systematic review and meta-analysis. The Journal of Pediatrics, 338-344.

ASAT Providing Accurate, Science-Based Information - Promoting Access to Effective Treatment

 Review of Sabrina Freeman‘s book, The Complete Guide to Autism Treatments

Help Us Get the Word Out  Interview with Tom Zane and About Suzanne Letso Science and Autism Treatment  Overview of ASAT‘s Media Watch

Encourage others  2 Research Reviews to sign up at  Clinical Corner: Early Intervention www.asatonline.org/signup  Clinical Corner: FBAs  Consumer Corner  Autism SIG Consumer Guidelines  Debut of ―Talk about Ethics‖ with Mary Jane Weiss  ……….And more!